A LIVING WILL

In a world where we can backdate blog posts to our heart’s content (which is why it looks as though I’ve posted something every week for the past six years in my family chronicle), maybe it’s not so unusual to say that in some respects I’m still stuck in Christmas mode although the New Year is waning.  Every once in awhile I’ll hear tell of someone else who’s in the same boat, like the mom at my daughter’s daycare this morning who said she had a choice over the weekend of taking down the tree or washing the floors.

As for me, I keep finding little things around the apartment that should be in the designated Christmas bins in the storage tent that burgeons beside the house we’re perpetually renovating:  I stop by the homestead every few days to open a container and tuck in the odd Charlie-Brown-Christmas fridge magnet, reindeer-motif tea-towel, tiny Baby Jesus unaccountably separated from his fellow celebrants at the Nativity scene, etc.  My older daughter is still reading the Christmas-themed Archie comics that came in her stocking, and I am loath to take them away, as they still no doubt have some cosmic wisdom to impart (did you know that Jughead is actually a great dancer?--it’s one of Riverdale’s best kept secrets!)... And spread-eagled on the dining room table (not that our tiny apartment actually has a dining room--our new goal is to be back in our renovated house by next Christmas) is the Globe and Mail Holiday Crossword, still only about half done, and that within the last few days.

Back in early December, my older daughter and I were talking about the upcoming holiday, and I said, “Won’t this be the best Christmas ever, because we have a two-and-a-half-year-old who can really understand it for the first time?”

“Yes,” she agreed, “But it will also be the worst Christmas ever.”

“Why, sweetheart?” I asked.

“Because Nanny won’t be here with us.”

“Oh, yes, I see what you mean...But we will go and see her in hospital and bring her some presents on Christmas Eve. Won’t that be nice?”

“Hmm.”

She was right, of course.  Poor Mom.  There she was, stuck in a hospital bed, unable to move much or speak much.  Choking back small amounts of applesauce, a real milestone, apparently.  Using the ceiling lift, they got her up into a wheelchair for our visit.  We did bring cards and presents and a poinsettia--on a friend’s suggestion, I included gifts “from Nanny” for the girls--and (as I seem to say about everything these days), it was what it was.

Back at home, I fielded numerous phone calls from friends and relatives, all wanting to know of Mom’s condition and whether there was any improvement.  “No one would want to live like this” was the general consensus.  I am still carrying around a significant amount of guilt, A. that I somehow caused her stroke (and deprived her of her will to live) by being impatient with her care requirements when she lived with us, and B. that I made the wrong decision in having them install a feeding tube at a crucial moment when perhaps if that had not been done she could have quietly starved to death.  

“Did she have a Living Will?” another recurrent question.  No she did not, and we never had that conversation.

My husband and I promptly had “the conversation.”  Pull the plug, his verdict; I want to live, my pronouncement on the subject.  Yes, I told him, even if I am dementedly smearing my own feces on the walls, I want to live.  It’s all we have, this life.  I will cling to it as long as possible.

A few days after Christmas we got the call that Mom no longer required her feeding tube and was stable enough to be eligible for transfer to a local care facility.  A whirl of activity accompanied this transition:  anyone who has ever moved a relative into an old folks’ home (or similar place) will know.  Even enumerating all the details makes me so tired I can’t think, so I won’t list them here.

However, the amazing part of it is that it really is so much better than hospital.  I had my doubts about it at first:  the medical attention and immediacy of doctors obviously is the advantage of hospitalization--and some aspects of hospital care, including regular speech therapy, are not standard parts of care at the Lodge.  Of course, what Mom did not have at the hospital was the interaction with other residents, the recreational programming including music and exercise, the ability to personalize her room with paintings on the wall, a few pieces of furniture, linens and clothing from home, etc.  After three months in a hospital bed, wearing a hospital gown, Mom is now able to be dressed in real clothes and wheeled down to the dining room/lounge.  She has even regained some ability to speak.

We keep thinking of items to bring to her:  certain photographs, paintings, artwork by the girls, bulletin boards, a whiteboard and markers, a television.  Already that TV has enabled her to request something else she really wanted.  We spent one afternoon with her, in which she tried unsuccessfully to find the words to tell us something specific that she wanted us to get for her.  Finally, as we were leaving, she turned on the TV and there was a commercial that mentioned something about a phone number.  “Phone number!”  she exclaimed.  

“Do you want a phone?” my husband asked.

“Yes!” she said.

It’s something I wouldn’t have thought of, because her ability to talk is so limited, and she certainly would not be able to dial a phone number or anything like that.  But people could call her, of course, if we gave them the number.  So we went ahead and arranged it. Other benefits of being in the care home include access to regular pedicures, eye exams, dental work, and hair care.  One of my frustrations about the hospital was that hair care did not seem to be part of the agenda even for long term patients.  Now it happens every week!

The staff seem very friendly and nice, as do the other residents.  Some of the latter are more alert than others, it’s true--but on the whole I hope it will be a stimulus to have the other people around.  Even with all the hustle and bustle of the hospital ward, it always seemed to me to be a very isolating environment.  Mom had started out with a nice roommate, but ended up first with a crazy one and then alone in a single room.  At the care home, she does have a private room as well, but I’m confident she doesn’t spend all her time there--they seem to make a good attempt to get the residents integrated with the rest of the community.

A lot of this may be my attempt to make myself feel better about it all, since really there’s not much I can do about the situation.

Every time we go to see Mom, she cries.  I continue to tell the girls that Nanny just feels emotionally a bit overwhelmed, that these are tears of joy, that Nanny is not sad to see them.  Certainly the seven-year-old understands, but the toddler maybe not so much.  “She cries,” I heard her say when someone asked her about her visit with her grandmother.  I find myself wishing that this were not the case, but again I don’t think there’s much I can do.

I try to see all the good things that have come out of this situation:  renewed contact and involvement with Mom’s brother, not to mention all the old-time connections.  I went through Mom’s address book and sent Christmas cards (not on time for Christmas, alas) to everyone whose name had a circled C beside it, a symbol which I took to mean that these were her regular Christmas card correspondents. In writing to them, I was aware that some might not know of the changes in Mom’s life over the past few months.  It took ages! I was surprised how many there were:  about 50.  I was impressed.  In a way, this list was a testimonial to my Mom’s ability to be in contact with people, a legacy of connection.  It’s also why she wanted that telephone so much, I realized.  The cards and letters still pour in, and I read them to her each time we visit the Lodge, then carefully pin them to the bulletin board where she can see these tangible reminders of her many loyal correspondents, still willing in this digital age to pick up a pen and write to their friend.  What they say is how much she’s inspired them, how they value her involvement in their lives stretching back many decades, across the distance of time and space.  It’s such a credit to her, really.

This was the best gift in the “worst” Christmas, to have that positive feeling mingled in with all the others:  Mom, you can still impress me.